CP Research Network Advances
A multicenter initiative to reduce intrathecal baclofen pump surgical site infection: a Cerebral Palsy Research Network quality improvement project” by Robert Bollo, MD, a pediatric neurosurgeon at Primary Children’s Hospital in Salt Lake City, Utah. This publication details the use of quality improvement methodologies to reduce one of the most serious complications of an intrathecal baclofen pump. We are expanding this effort in our network beyond the original four centers included in the publication to four additional centers. Dr. Bollo also delivered our MyCP webinar on ITB pumps last year.
- In July 2022, Developmental Medicine and Child Neurology published “Epilepsy and proxy-reported health-related quality of life in children and young people with non-ambulatory cerebral palsy” authored by our Epilepsy Study Group principal investigator Adam Ostendorf, MD, a pediatric epileptologist at Nationwide Children’s Hospital. Dr. Ostendorf also presented his findings from his network study at this epilepsy MyCP webinar last year.
- A month prior, June 2022, Neurology, the Journal of the American Association of Neurologists, published our “Top 10 Research Themes for Dystonia in Cerebral Palsy: A Community-Driven Research Agenda” by lead author Laura Gilbert, DO, MBA. This publication is being used by the CP Research Network and others to prioritize research and care for people with dystonia in CP. Dr. Gilbert presented the results in a MyCP Webinar and Dr. Bhooma Aravamuthan is leading both a dystonia diagnosis initiative and a dystonia in CP research group in the network both of which will directly improve outcomes for people with dystonia in CP.
- In March 2022, the Journal of Pediatric Rehabilitation Medicine published “Hip surveillance for patients with cerebral palsy in the United States” by M. Wade Shrader, MD based on a review of practices across the CP Research Network. Dr. Shrader talked about hip surveillance in our most watched MyCP webinar on the topic.
The CP Research Network Curriculum Vitae
We have assembled an all-in-one document to summarize the breadth and depth of the network’s progress which is available for download on our website. This PDF delineates network leadership, participating sites and investigators, advisors, committee members, board members, funded studies, publications and presentations all in one document. We keep it up to date with our new sites and investigators and recognition of our ever growing body of work. Community members can bring it to their CP physicians to ask if they plan to be involved! Clinicians and researchers can use it as evidence for why their institution should be involved in the network activities.
Our Community Registry Goes Back Online
While we are excited about these publications and accomplishments, our work is just beginning. After a several month hiatus while we transitioned between data centers, we are happy to announce that our Community Registry is back online and accessible at mycp.org. The Community Registry captures lived experience from community members in the form of surveys. In particular, it hosts our adult study of wellbeing and chronic pain that will help us target future studies to improve outcomes for adults with CP. Parents of children (minors) can also contribute to the Community Registry with other studies available there. To learn more about the Community Registry, you can visit our Community Registry information page.